4 posts tagged “comorbidity”

Parkinson’s disease + anxiety/depression: Stigma-busting for Mental Health Month

Posted May 31st, 2018 by

Stress. Anxiety. Depression. Have you experienced any of these along with Parkinson’s disease (PD)? As National Mental Health Month comes to a close, we’re highlighting how common these non-motor symptoms and mental health issues are among people with PD.

Plus, see some new research on the prevalence of feeling demoralized (vs. depressed) with PD, and explore how members of the PatientsLikeMe community try to manage their mental health.

Research shows that the vast majority of people with PD have non-motor symptoms (NMS) — with psychiatric symptoms (like anxiety, depression and psychosis) accounting for 60 percent of NMS in one large-scale study.

“That’s why taking action is important,” says Andrew Ridder, M.D., a movement disorders specialist at Michigan Health. “If you or a loved one has had a new diagnosis of Parkinson’s disease, we recommend an immediate evaluation for depression, mood and cognitive problems. Frequent monitoring should also be done throughout the course of the disease.”

Dr. Ridder cites some key stats:

  • About 5 to 40 percent of people with Parkinson’s disease have a clinical diagnosis of anxiety
  • Between 17 to 50 percent of patients with Parkinson’s have depression

“Anxious mood” and “depressed mood” are commonly reported symptoms of PD on PatientsLikeMe. Hundreds of members have reported a diagnosis of PD plus a mental health condition.

Work with your doctor or care team to find treatments that work best for you. Some of the treatments Dr. Ridder mentions for people with PD and depression or anxiety include:

  • Selective serotonin reuptake inhibitors (SSRIs) such as paroxetine or sertraline
  • Serotonin/norepinephrine reuptake inhibitors (SNRIs) such as venlafaxine
  • Cognitive behavioral therapy or psychotherapy (learn more about types of therapy and finding a therapist)

He also discusses some lesser-known treatments, adjustments to carbidopa-levodopa (Sinemet) regimens (to treat anxiety during “off” times) — as well as some treatments that are not prescribed or advised for people with PD — so check out his full article on PD and mental health (also, check out this video).

Anxiety and Parkinson’s

clinical diagnosis of anxiety is marked by frequent, long-term “feelings of worry, nervousness or unease that may be accompanied by compulsive behavior or panic attacks.” Dr. Ridder says some of these symptoms can be worse or occur only when Sinemet is wearing off, also known as “off times.”

Join PatientsLikeMe to see what members living with PD have shared about their experiences with anxious mood as a symptom (and the treatments they’ve tried) — after joining, click here. Nearly 300 members report having diagnoses of both PD and generalized anxiety disorder.

Depression and PD

“Depression and Parkinson’s have so many similar-looking symptoms that it is hard to tell the difference between them,” Dr. Ridder says. “It’s important to note, however, that depression is not a reaction to the disability. Rather, it seems to be related to the degeneration of specific neurons in Parkinson’s disease itself.”

Both PD and a depression can bring: sadness, pessimism, decreased interest in activities, slowing movements and fatigue. Clinical depression or major depressive disorder is often accompanied with guilt and self-blame, which you don’t often see in Parkinson’s disease depression, Dr. Ridder points out.

Join/log into PatientsLikeMe to explore what other members with PD have shared about their experiences with depressed mood as a symptom (and the treatments they’ve tried for it) here. Also, connect with about 300 members who say they’ve been diagnosedwith both PD and major depressive disorder.

Depression vs. feeling demoralized

New research published in the journal Neurology sheds light on how many people with PD may feel demoralized (and not clinically depressed). Among the 94 study participants with PD, 17 of them (18%) felt demoralized, while 19 of them were depressed.

“Demoralization is a state of feeling helpless and hopeless, with a self-perceived inability to perform tasks in stressful situations,” PsychCentral explains in a report about the new study. “With depression, a person usually knows the appropriate course of action and lacks motivation to act. With demoralization, a person may feel incompetent and therefore uncertain about the appropriate course of action. The two can occur together.”

Study author Brian Koo, M.D., says the distinction is important because “demoralization may be better treated with cognitive-behavioral therapy rather than antidepressant medication, which is often prescribed for depression.”

Get tips to help handle or prevent demoralization in this recent Parkinson’s Foundation blog post.

Let’s not forget stress

Stress refers to “the emotional, psychological, or physical effects as well as the sources of agitation, strain, tension, or pressure.” Stress can manifest itself both physically and mentally, so it’s also important to keep in mind in managing PD.

See how stress affects the PatientsLikeMe community as a symptom, and what members with PD have tried to help manage it. Also, check out the Michael J. Fox Foundation blog posts on 7 Apps for Stress Relief and Wellness and the benefits of low-key calming activities for overall well-being.

Explore the forums

As a logged-in member, click on these links to see what other members living with PD have shared in forum posts about:

And keep in mind that you’re not alone in experiencing these symptoms or conditions.

How have mental health symptoms or conditions affected you along with your PD? Make a comment here or join the community discussions through the links above.

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Member Christine’s Instagram takeover for World Lupus Day

Posted May 11th, 2018 by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

Join PatientsLikeMe today to connect with Christine and thousands of others living with lupus.

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